Oct 7, 2022
The agency that oversees organ donation and transplants has recently been under fire from congress. The United Network for Organ Sharing (UNOS), was strongly reprimanded in a congressional hearing held in August 2022. UNOS came under scrutiny from both the Republicans and Democrats on Capitol Hill for claims that donor organs were ending up in the trash instead of being transplanted into waiting recipients. The hearing contended that donor organs were lost in transit, or arrived late, damaged, or diseased.
A patient in Texas who is currently in need of a second kidney transplant was asked her thoughts on the congressional hearings and report. “Patients, we’re not looking at that”, she said, referring to the debate going on in the hearing. “We’re like, hey, I need a kidney. For me, I need it now. I’m tired of dialysis. I feel like I’m about to die”.
A new policy implemented by UNOS just over a year ago has seen the number of kidney transplants increase by 16% in the past year. UNOS made changes to the way in which patients are prioritized for transplant. Sicker patients are now given priority over those patients who live closer to a transplant center.
However, there are still almost 100,000 patients who are right now waiting for a kidney; with approximately 5,000 people a year dying before being able to receive a kidney transplant. According to The Senate Finance Committee's two-year inquiry, these people may have died while perfectly good, donated organs ended up as trash.
The bipartisan committee apparently uncovered numerous incidents that were previously not disclosed to the public. One such incident took place in November 2018 in Charleston, South Carolina. A patient there died after receiving an organ with the wrong blood type. In July of 2017 in Las Vegas, Nevada, two kidney recipients contracted a rare infection. One of the patients died a few days later. Also, in Kettering, Ohio, where in June of 2020 a transplant recipient was informed that he had accidentally received an organ from a donor with cancer and would likely develop cancer also.
Those were some of the incidents that left the bipartisan committee of United States Senators questioning whether another entity should perhaps take UNOS place. The United Network for Organ Sharing has held the contract to manage organ distribution since being established in 1984 after congress enacted The National Organ Transplant Act. The act was intended to address the shortage of donor organs and to improve donor matching and placement.
Senator Elizabeth Warren (D Massachusetts) said that, “The organ transplant system overall has become a dangerous mess”. She went on to also say, “Right now UNOS is 15 times more likely to lose or damage an organ in transit, as an airline is to lose or damage your luggage, and that is a pretty terrible record”.
Yet, does the blame rest solely with UNOS because they, as an agency, were negligent; or, as an overseeing agency, are they being held accountable for incidents perhaps beyond their control?
The two year investigation concluded that antiquated technology bears at least a significant part of the blame. The outdated technology has no way to even track organs in transit. Also the UNOS computer system can unbelievably go down for an hour or more at a time, therefore, delaying matches when every hour counts. In an era where consumers are able to track a DoorDash dinner delivery, it seems inconceivable that we currently have no requirements in place to track life saving organs in transit from donor to recipient. Yet, there is currently no federal agency including the Health Resources and Services Administration (HRSA), which currently contracts with UNOS, that requires monitoring of transportation for transplant organs.
Barry Friedman, director of the transplant center at Advent/Health in Orlando, Florida complained, “I can’t even get a kidney that’s 20 miles away from my transplant center. I mean UNOS was thinking it was in Miami”. Dr Friedman continued, saying, “It was actually in Orlando, just 20 miles away from me”.
The congressional report found that between 2010 and 2020 there were 53 complaints about transportation made to UNOS. This included numerous missed flights that led to transplants being canceled and the organs discarded. The report also referenced a 2020 KHN (Kaiser Health News) investigation that, “uncovered many more incidents - nearly 170 transportation snafus from 2014 to 2019”. And further, “Even when organs do arrive, transplant surgeons say the lack of tracking leads to lengthy periods of cold time; when organs are without blood circulation. Often the transplant surgeon can’t start a patient on anesthesia until the organ is physically on hand”.
“One in four potential donor kidneys now goes to waste”. This statistic comes from data UNOS themselves collected, and there are real fears that the number may worsen as organs travel further to reach the sicker patients under the new allocation policy that was implemented.
Dr Jayme Locke, who directs the transplant program at The University of Alabama-Birmingham said, “A kidney arrived frozen solid and unusable in 2014”. Dr Locke went on to talk about an incident in 2017, “A package came in squished, with apparent tire marks on it”. The organ in this case unbelievably was able to be salvaged. However, in May of 2022, “Four kidneys had to be tossed for avoidable errors in transportation and handling”.
UNOS CEO, Brian Sheppard had already announced he would be stepping down when the congressional hearings were taking place. He defended the organization that he has led for the last decade. He pointed out the rising rate of transplants. The new allocation policy UNOS implemented, and, which has already been challenged in court, is partially responsible for the increase in transplants. The new policy has also contributed to equity gains, boosting transplants for black patients by as much as 23%. Black patients are more likely to suffer from kidney failure, but historically, have had difficulty getting onto transplant lists. “While there are things we can improve - and we do, every day - I do think it is a strong organization that has served patients well”.
There was another independent report that came out this year that found the blame in a majority of the incidents should be shared between UNOS and hospital transplant centers and the local organizations that procure organs from donors. The three work together in the organ donation and transplantation process. However when questioned about possible mistakes, or asked about the number of patients who die each year on wait lists, often, the three turn on each other to lay or pass blame. “UNOS is not the only source of problems with efficiency in the system”, said Renee Landers, a law professor who leads the Biomedical Concentration at Suffolk University. She was on the committee that helped to produce the broader report and said, “Everybody had some work that they needed to do”.
All of these reports, along with the court challenges to the changes implemented by UNOS, are simply background noise to that same patient in Texas waiting for a kidney transplant. Although she was encouraged to learn of the rise in transplant rates, especially among black Americans like herself. She remains mostly focused on one thing. “I just need a kidney that works for me”, she said, “and, I need it now”.
Here is the video of the Senate Finance Hearing from the Union Herald.
Monica McCarthy has bachelors in Political Science and Criminal Justice from Central Washington University. A majority of her career was spent as a political consultant. She currently works at KidneyLuv as a staff writer.
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